First, background. Male, 69, diagnosed early 2015, W&W, lympho count 17 and stable to date.
Right, recently got a nasty bout of "common cold"; this one is in my throat only, no head cold, not on my chest or nose. Now, 2 years ago, I would have got something like this and got rid of it in 2-3 days with cold remedy, honey and a drop of malt whisky. Not this time! So, first question.
Did I cop for this because...
a) this strain just a really nasty bug doing the rounds, or
b) because I'm getting old, or
c) because I've got CLL?
I've had this over a week and all it seems to do is get worse. So, question 2.
Is it hanging around because...
a) this strain just a really nasty bug doing the rounds, or
b) because I'm getting old, or
c) because I've got CLL?
I hope you can see where I'm heading. What is the risk that we start blaming CLL for everything we get, or, at my age, should I start being realistic and just recognise I can't do as much, have not got the energy levels I used to have? I see this as the big CLL conundrum, especially at W&W. How much do we actually know about how CLL affects our natural health?
Any comments gratefully received.
Written by
MR2Don
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Firstly, welcome to the forum, even if it's not what any of us really want to be a part of if given the choice!
You raise some very good questions and ones that have been asked several times in the past. In fact it's a similar topic to one I raised last year and so rather than repeat what others have said I have given the link to it here. (I hope, not done this before)
We really wonder the same things all the time. My husband is 65 and every cold just knocks him on his butt, particularly lingering coughs. He was treated with FCR so has battled lots of bad stuff. He just really always wants to bounce right back and just do everything he wants.
With the diagnosis of CLL comes the term and state of being immunocompromised... our immune sytems simply don't work well...
Also comes the end of the phrase... '...let's see if this gets better by itself...'
Get medical attention... as much as I like a good single malt... 😄
CLL opens the door to all kinds of opportunistic infections, viral, bacterial and fungal, and these can take hold and cause pneumonia... which can be fatal.
Get your shots, flu and pneumonia vaccination, and everyone in your family should have a flu shot to help protect you by community immunity...
Hello MR2Don - I was diagnosed with CLL one month and ago and put on W&W but it turns out I should have been told 18 months ago. Your question could have been written by me word for word!! I thought I was dreaming and reading my own words. During the 18 months when I was not told of the diagnosis, I climbed mountains and led expeditions and never had a problem. Since being told I have CLL one month ago I have become a hypochondriac and feel tireder and have been getting every vaccination available! Is it all in the mind?
I think we sometimes underestimate the psychological impact of this diagnosis in that it's one thing to suspect we are vulnerable but quite another to have it confirmed! The unpredictable and unquantifiable nature of CLL perhaps leads to hyper vigilance but I tend to be with Chris on this because on the occasions I've been tempted to 'tough it out' with persistent symptoms, they've developed or come back to bite me on the rear!
It would be so much easier if there was a 'risk chart' where we could plot the need for intervention but I've found that lab levels don't always correspond to consequence very neatly. My advice would be that any chronic co-morbitities should 'up the ante' too because CLL has a tendency to invite those to join it in a joint assault on the system. And regrettably mature years can add to this risk...it's a reality!
I know this doesn't really help in terms of guidance and none of us want to be 'doc botherers' but this changed reality means our wonky inner defences now usually need bolstering and being a suffering hero wont get them the help.
And this is from the person whose GP said this week, 'we don't see much of you'. When I said, 'I must be in good health then' he couldn't help but laugh!
My advice is, if it's bothering you too long or too much, bother a doctor with it!
The general advice I've heard for CLL is to not tough it out, get on antibiotics as soon as possible - we CLLers need all the help we can get. Also to rest and sleep enough to give our immune system time to just focus on fighting off the lurgi.
Yes, you can see this as boring or you can rest your body but turn your mind out to play: listen to an audio book, write a letter, listen to music, make that phone call, sign a petition, do some research, plan all those dreams you're going to fulfil when you're better and up and running....
Excellent comments by every one. We are having a bad bout right now but started on antibiotics late today. I know it is a bad bout because he was in bed all day and won't eat. Cough and fevers. The dr. is on it and I hope for the best. At least he hasn't had to go to the hospital.
Thanks for all the responses. I posted for two reasons; first to establish how much the forum isused and secondly to see the quality of responses; on that front it seems to be active and good quality.
I'm starting to see that the problem with a "common cold", for which I understand medical science is yet to find a cure, is that the sufferer is dependent on their immune system fighting it off; in that case, we are severely disadvantaged, sort of fighting with one arm behind our back.
I'm not sure about the "get anti-bios" approach. Again with "common cold", this is viral, anti-biotics won't fix it and, certainly in the UK, we get a lot in the media about how over-prescription of anti-bios is weakening their effect. Having said that, my GP did prescribe me Amoxicillin, but more to help prevent the cold turning into anything nastier; she also said that they can sometimes slow down viral infections.
So, still coughing horribly, not sleeping at night, but I think it's getting a bit better; we'll have to see how it goes.
The get antibiotics thing, in my opinion has a lot to do with knowing your own body and having a doctor you trust and who knows you. My GP knows that I will avoid antibiotics if not needed, but that I have a pretty good sense of when it is time to call and be seen or be put on something. She has a few CLL patients and has made a point of being basically educated about it. I have also learned the hard way, years ago, that a culture - sinus, throat, etc. - can mean the difference between getting something that is effective and popping pills that do nothing.
I am 71 and I was diagnosed with CLL over 10 years ago but have been on watch and wait ever since with no health problems on a daily basis. However, when I do get a cold it is a really bad one and takes ages to shake off.
A month ago I caught pneumonia and was hospitalised for two weeks whilst they tried several antibiotics before they got on top of it. Nobody really said whether the CLL was making it more difficult to recover but I am sure it does.
Since being at home I have slept a lot and only just started going out for walks. My advice would certainly be to go with what your body tells you. If you or tired or lacking in energy just rest. Try going out for a walk when you feel ready. Your breathing will tell you when you have had enough. Try a little bit more each day. Above all accept that it will take a while to feel normal and don't rush it.
I had pneumonia previously roughly 15 years ago and I think I recovered quicker then but that was also probably because I was younger.
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